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How do you stay sane?

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Ulcerative Colitis
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Posted 11/4/2016 3:22 PM (GMT -7)
What are your strategies for dealing with the ups and downs of chronic illnesses? Especially those frustrating periods when flares persist for a long time and it's very unpredictable?
Posted 11/4/2016 3:55 PM (GMT -7)
That was one of the toughest aspects for me in dealing with UC. I would flare up for so long, at a certain point, I just wouldn't do anything. I would make excuses to avoid going anywhere and I would tell myself that it was OK because I didn't want to go anyway... I saw a psychiatrist for a while, and took antidepressant medication, which helped a bit, but the truth is, how can I be happy when I was scared to leave the house? When I was in remission, I worried about the next flare up. Every time I used the toilet I would look in the bowl fearful that there might be blood, eventually there always was. Sometimes it would be a one time thing, sometimes it was the start of another 6 month episode that included steroids, mood swings, sweating, weight gain, acne... All stuff that was more intolerable to me than the illness itself. It was bad enough being sick and incontinent, but to I was also seeing someone I resented in the mirror.

I guess I'd say the best strategy I used was seeing a therapist. Of course, that can also be stressful if you're unstable. I'd have to not eat in order to get there, otherwise I'd risk an accident. Trying to think positive is helpful. Realizing there are lots of options, and even when faced with the worst of the worst, things can turn out surprisingly better than you imagined. I am so thankful I am done with it.
Posted 11/4/2016 3:58 PM (GMT -7)
i gave up being sane long before UC hit - so easy transition for me tongue

for most normal folks, my advice is to know that it will get better, one way or the other -

acceptance always helps -
Posted 11/4/2016 5:10 PM (GMT -7)
It got easier with time for me but getting out of denial was important. Accepting that this is my new normal allowed me to lower my personal bar and not trying for 100% perfection as I did previously.

My strategies:
NEVER schedule appointments first thing in the morning, too much stress.
CANCEL when you just cannot do something planned, friends and family will understand and no one else counts.
Be good to yourself, you didn't cause this disease so no guilt.
NOTHING is life or death except death and try to avoid death.
Learn to say NO, having backbone helps UC greatly.
Be a strong advocate in your healthcare, you are the only one looking out for you 100%.
QUIT doing things that cause stress even if it's financially desirable, it's your money or your life.
Enjoy the life you have, it's way better than many people's lives in this world.
Posted 11/5/2016 12:11 AM (GMT -7)
For me, based on my many many experiences (mostly negative on every level) my savior from insanity is practicing daily meditations, to simply give my mind a break from focusing on as many positives I can. I noticed a huge difference when I stopped doing it daily and felt myself slipping down again so I got on some meds to help with my focusing issues and since I started daily practice again, things from mostly all levels are much improved and seems to be getting better as time goes by.

And it's becoming wide known by doctors and health practitioners that mediation is a huge and important aspect of helping one's mind, body and soul (and it's about time, there's enough evidence to back up what all meditating daily does to brain and body cells, not to mention affecting matter)....I just went for my first one on one consult with my gut physiotherapist to help aid more (I'm using every tool I can find that is positive) with my IBS and first thing she suggested was meditation and yoga as well but especially meditation....she gave me a Gi's website that's in my area that specializes in using meditation as a major player for his gut-issued patients (mostly CDers I think) he has guided toilet meditations that he asks them to use along with their meds with all of his patients and they are having great success.

Thankfully they are learning more about the use of MJ as well and it's healing affects for more than was realized....
Then there's also the fact that lately there's been a lot of new discoveries being made about IBD causes more now than ever, which is a huge breakthrough IMO.....looking at the big picture, I feel more confidence that freedom from this (and possibly other) dreadful illness/es than I ever have, low and behold, I think the power of meditation is definitely real and that has helped me quite a bit.....I have spent the majority of my life cynical more than not and it sure feels lighter, freer and happier to not let the negative thoughts take over because either way, it's not forever so why not make the best of it...then it'll likely go by faster too.
Keeping your chin up helps you see the light at the end of the tunnel, who knew!
Posted 11/5/2016 5:57 AM (GMT -7)
I try my best to stay sane, but sometimes you have to cross the line just to remember where it lays... haha.

You learn your uc-flare-imposed limitations, accept them, and work the best you can within them. You prepare and take precautions based on your limits.

You find an outlet to vent, get out your frustrations however you can. You find hobbies, meditation, yoga, mindfulness and other things to forget about your uc and invest in things you enjoy, that give you peace and relaxation. As you cannot worry about your health 24/7 and expect to remain sane. You need distractions and to have things you enjoy to have a healthy mind.

I've found that the longer I've had UC the easier it has become to cope with it. Once you know your enemy (uc) and the types of things it can throw at you and when, the less surprise you get. So, you anticipate and are prepared.
Posted 11/5/2016 6:53 AM (GMT -7)
I have many chronic health conditions and it took me a long time to come to terms with it all. I am now at a point that if something else is thrown at me to just accept it as part of my life for instance I just learned I have low potassium and now I'm on potassium supplements. It is what it is.

It helps if I distract myself and find things that I enjoy. And all my family and friends know that I may have to cancel plans at the last minute. I used to feel guilty but not anymore because I know there are just some things that can't be controlled.
Posted 11/5/2016 9:47 AM (GMT -7)
I think don't make commitments that are going to be hard to keep or stressful to go along with during a flare. I learned it's not fair to put myself through that because I certainly wouldn't do it if I was ill with something like the flu or a bad migraine etc. We can keep friendships going through things like Facebook and telephone calls rather than risky meet ups when we aren't really well and it can become an ordeal.

I sometimes listen to reiki music if I can't sleep or wake up in the night as it is quite calming.

I make sure anyone else at home knows to leave the bathroom clear for me when there is more than one bathroom, or if I have to share, arrange for them to use it when my pattern suggests it is the best time. This makes me feel a lot less anxious.

I avoid people who might make me feel more vulnerable about being ill and try to use the time to watch dvds or read about things I don't normally have time to do.

I also remind myself that it isn't just us that risk accidents and have bowel issues. I know a couple of non ibd people who have had accidents and there are a surprising number of other illnesses and injuries which cause bowel issues too which are not so obvious unless you know more about them.

I hope you are coping okay. I noticed we have both been flaring on and off a lot this year so my thoughts and well wishes are with you and anyone else who is suffering at the moment.

That reminds me of another thing that keeps me going-flares are temporary even if it is a longer temporary than we would like. Thankfully we do get periods of remission.
Posted 11/5/2016 10:47 AM (GMT -7)
I take each day as it comes and really try to make the best of it. I also eliminate any stress that I can out of my life.
Posted 11/5/2016 10:56 AM (GMT -7)
I think the people you have around you are important, because if you don't have a good support system it's hard to stay upbeat and sane!! you really do have to have support, and someone close to you, that you can talk to, someone that will listen, and understand, my husband is pretty good in this role.

Also, I'm an abstract artist and paint often, and so I go down to my studio and listen to music whilst painting, it's a great way to relax.

I have three dogs which I find really helps me, I don't think there is anything more soothing than pets, whether it's a dog, cat, or parrot, they just help you to relax and refocus, and help you get things into perspective.

I have other health issues apart from the IBD, but I manage to keep them to the back of my mind most of the time, which I'm good at doing, and also it helps to think of other people that are far worse off than myself, that kind of thing. These are a few of the things that help me deal with my illness.
Posted 11/5/2016 11:21 AM (GMT -7)
Thanks for all the amazing responses guys. So many of these things help me too but I do fall off the wagon (this past week I haven't been in my absolute best mental state for example...which is not a problem but I do want to be aware of it). We're all agreed that relaxation helps, staying positive helps, talking and feeling connected to others helps, mindfulness helps ... I guess in a sense it's all obvious intellectually, but it's different to experience it and know it for yourself. Personally I'm not the greatest fan of 'positive thinking' and prefer realistic thinking (crap happens ... literally!) but I guess cynicism is not useful either. The only thing I wish I had much more of at the moment is the feeling of close relationships but maybe I can work on that over the next while. I wish you all the best as I do myself especially as we have a new year coming up. Maybe it can be a better 2017 for us all. :)
Posted 11/6/2016 1:17 AM (GMT -7)

~ chicken wings ~ said...
I guess in a sense it's all obvious intellectually, but it's different to experience it and know it for yourself. Personally I'm not the greatest fan of 'positive thinking' and prefer realistic thinking (crap happens ... literally!) but I guess cynicism is not useful either. The only thing I wish I had much more of at the moment is the feeling of close relationships but maybe I can work on that over the next while. I wish you all the best as I do myself especially as we have a new year coming up. Maybe it can be a better 2017 for us all. :)

I've always been that way...."cynical-realistic" I was raised in a very negative environment so that didn't help me or anyone around me, it makes for a very stressful life and possibly down the road of depression and anxiety issues as well. I have found that meditating and being able to become more mindful as a result of daily meditation practice, it has helped me tweak out the negative and still be realistic. I learned that the only thing I can control is my responses to negative issues and to positive ones, not anyone else's and that alone has taken a huge load of stress off....I often remind myself that all of this is temporary on the big scheme of "life" as it is here....and that's what gives me a huge relief to help me get through tougher stuff. So far, for me, it certainly makes a huge difference trading the negative for more of the positive (thoughts, actions, words/mindfulness and consciousness which is the whole of it all), life has all kinds of experiences, they are all temporary just as our physical bodies are...best part is, once the physical ends, so does all the negative....I find that calming so I try and focus on that and it makes a world of difference compared to how the first decade of my life has gone. I've spent a lot of time researching the validity of daily meditation practice on various levels of research out there (NDE's, Mind over Matter, documented physical, mental and emotional benefits of healing, clarity and knowledge, Scientifically, Nature and Spirituality and even Cosmically and so many more interesting and positive connections affirming one another with their connections. Meditation will actually change our physical cells in our own bodies...not to mention the changes in the frontal lobe of the brain's cells and circuitry...pretty amazing and powerful what daily practice benefits there are to it.

This is just my own experience....we all get to make our choices about whatever we want is basically what it boils down to.
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